Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello Everyone, I am new to thsi group and am terrified on the possibility that i hae MG. Had blood test (ACH??) and was negative now awaiting the EMG on 4/4. I have had to wait so long to see doctors and to schedule the EMG it has been brutal as you all know. I just need some support and correct info please from anyone. My story is back in Sept./16 i started feeling exhausted after i did my walk at park. That was really all the symptoms i had for most of the time. I started the usual route w/my PCP...tons of bloodtests...all good. Next my Endocrinooligist, have thyroid problem diagnosed in 2000, he did tests all good. Back to PCP...she doesn't know...next Neuro who did blood test for (ACH??) and it was negative. she doesn't do MUSK sd next step is EMG & that she thinks i have small chance of hving MG...then ended up in ER 2xs in one week with palps and feeling like i was going to die..BP 198/90 first time and 157/80 next time. My heart was beating out of my chest...felt like i was going to pass out...had terrible cramp underneath my rt breast and arms and legs ached....of course that didn't know anything and sent me home with Xanax....real great....the ER dr was very telling when he sd to me we don't discover long term probs at ER we fix the emergencies...then saw Cardio dr bc of palps and high BP.....he says mb i am gluten intolerant and that could be causing the fatigue, muscle cramps and stomach issues etc....but wants me to have cardio ultra sound & monitir done this fri just to be sure......so my next apt is Thurs., 3/23, w/a Rheumatologist who i am hoping can really shed some light to what is wrong with me and to mb take away this full tilt, terrifying fear i go thru every day...:( I hae no ocular probls w/drooping or double vision but with blurriness but i hae always had bad vision and had a prob w blurriness esp since i hae gotten older, I am 62. So don't know if that counts. But what has happened to me ever since that Neuro talked to me and implanted that seed of doubt abt MG; I feel like i now have every symptom there is and am feeling them all. I am losing my mind from fear and anxiety. ofcourse as soon as she mentioned it, i wt home and Googled MG 1000xs at least and learned everything i could and just got a sicker and sicker feeling inside as i read about what a terrible disease it is and a scary one!!:( So now everyone i don't know if these symptoms are real or did i make me have them...IDK....I feel like i am going crazy with this and i need all the help and friends i can get PLEASE...PLEASE!!!! My legs; cramps esp in calves only..then down into my feet and then numbness....my arms feel like they have cramps too.....having numbing and tingling in legs & feet and have been having those horribel elctrical feelings all over sometimes. As far as my vioce it is ok, checwing a bit slower but ok but swallowing may be getting a bit tougher (just a little) I mean i still eat what i want but sometimes feel it when it gets to the bottom of my throat????? Alot of burping...alot....alotof stomach upset, alot of BRUTAL headache ALMOST EVERYDAY but yet my eyes seem ok for now. Have NOT noticed any breathing probs so far thank GOD! So here I am infront of my new Friends, thanking God every day, that I found this Group and hoping and praying someone can read my story and offer anything; education, support, help for the anxiety i am carrying around 24x7, comments on my situation...anything fr anyone will be so appreaciated....Even tough I am 62...you guys have no IDEA how TERRIFIED I am to think that I may have this horrible disease! :( Thanks fo taking the time.....xo
I made a list of the medicines I am taking. Then I went on-line and wrote down for each medicine the side-effects that the internet said were related to the medicine. Perhaps, depending on what you are taking, some of your symptoms are related to medicines you are taking. This would calm me a little, I think, if I knew that the discomfort was explained away as a side effect and not my body doing its own thing.
Buy a blood pressure monitor. I have one that goes on my wrist. Bought it at Walgreens. In an ER I would not think that it is unusual for anyone's BP to be elevated.
Again, very sorry to read your post about your problems. Others, I am sure, will also post some nice comments. I have only had MG since December 2016.
MG can be difficult to diagnose, so it is hard to rule it on or out.
Most of us with MG notice that our voluntary muscles tire very rapidly when we try to do something, especially anything repetitive. For example, when I had it at the worst, I could chew a dozen times then had to rest; type a line on the computer and then rest, and walk a little, but needed to rest soon.
The commands from brain to muscles doesn't get transmitted efficiently and so we get tired. So when you list so many symptoms it makes it seem like there may be something else happening.
When you read about MG, you may get mixed up about what symptoms are from MG, and what comes from the medicines we take. For example, our muscle cramps, digestive symptoms are more from the Mestinon med we take than from MG itself. Many of us take prednisone which also gives us many side effects.
Some of us have MG and other medical issues at the same time -- and that also gives more symptoms. If MG is far advanced, then we do get more problems than just the tiredness after little activity.
I never really had pain, just inability to do physical things with MG.
Finally, if it is MG, it is treatable and the majority of folks actually do reasonably well with treatment. My neuro keeps telling me that MG is a much better disease than most of the other neurological problems she sees as it is treatable and not progressive with treatment. MS, Parkinsons, and many more are much more of a problem, she says.
So, calm down, let the doctors do the tests (they are inconvenient but not really that bad -- even the emg), and things will get sorted out. If it is MG, it is treatable and you can get on with your life. I got it at 65 and now am 70.
I had an easy diagnosis (blood test positive), about 6 months that were bothersome as I was unable to do much physical stuff, (but not in pain and mostly bothered by the medication side effects), then prednisone got things under control, and now 4 years later I am symptom free (one of the 15% who go into remission).
Good Luck Russ
G2 here. It's OK. There are some things your body is telling you, and the doctors don't know the answers yet, and you don't know them either. They tough part is, whether it's MG, or non-celiac gluten sensitivity (NCGS) (see Mayo Clinic), or both, or other things, discovering the names for them won't then magically cure them. It will give you and the health team you put together a direction to focus on, but really, ALL of you are trying to do one thing: tune in to what your body needs. SO. If one clue is gluten the maybe thats what is firing up your immune system to trigger all sorts of haywire inflammatory things over decades of intake. MG is just one autoimmune /inflammatory condition out of 30 or so. Celiac or NCGS is very commonlyrics found in people with other autoimmune diseases, particularlying Hashimoto's Thyroiditis or IBS related disorders. Consider reading about and discussing get with your Rheumatologist an AIP FODMAP diet for 30 days, to see the impact. It was so dramatic, I am happily on it the rest of my life, while slowly adding a couple foods back per month as tolerated. Really, it's about discovering how to remove all the triggers (Inflammatory and autoimmune caused diseases are like a multiple decades, perfect storm: you may have many contributing factors that unknowing stress your body, including genetic ones, then one day, it's the last straw and poof! You're suddenly terribly sick, when you've been doing the same thing for years). If you focus on what you CAN change, and make yourself a promise that you are on a long journey to *take care yourself* and *learn about what you and your support team need to understand about your body and your life and your goals*, it will all begin to sort itself out. I was so scared too. I thought MG meant I was going to go through what everyone ELSE is facing--or worse, I had no idea what to expect!! In some ways the hardest part is, now that I know that for me it is about removing everything I can that sets off inflammation (worry, pushing when I'm tired, eating anything my body is sensitive to), I am so much happier and healthier. Then it is about acceptance and discovery and realizing that I am still every bit as important and exceptional even if sometimes every day feels like I pulled an "all nighter", my memory and speech is like earliest stage dementia, and at 3p I walk into an invisible brick wall and fear I can't walk from the conference room the three blocks to the car. I am still contributing as a CEO of a startup company, my husband makes me pack up and leave work early, and he drives the car up to the door. And nobody says anything about my droopy eye, and they still rib me like one of the guys. The moral of the story is, you don't have to do everything you were doing before you were sick. Stop and learn to love and respect your body. Your friends and family will be there--they may learn at a faster or slower pace (or you may discover who your true friends are, and meet new, precious ones...more blessings!)
...Ding dong, you'really on a new journey, and I can tell by your post you've got a good brain attached to that body--get it in gear and working on discovering what is going into your body, and maybe what's missing, and what changes need to be made (meditation?--on my list, dang it!--some other de-stress to reduce adrenal/cortisol levels?)...you can Google the impact of cortisol, pituitary, autoimmune system. Whatever you name what youve got, your system is sick from being on emergency alert for too long...Gotta calm all that stuff down....(take it from a veteran who knows) Capt G.
I've been in the diagnostic nightmare process for years. I rarely have blurry vision but recently have been having problems with my voice getting weak with talking. My Neurologist has given me 6x60mg of Mestinon per day as I had a great response to it. It takes perseverance to get any kind of autoimmune diagnosis.
Good luck
Flutebell